I hate that this is my life

[olivialouise31]

So I have two young boys eldest is 3, youngest is 2. But my eldest is disabled, has terminal medical complex health conditions where he uses a lot of medical equipment, a lot of medications and tube fed. I had him when I was 20 so quite young. He's nearly died 3 times in intensive care and has been in hospital nearly the whole of he's life, so most my days are being stuck in hospital for the past 3 years
I hate this, I never wanted this for my life. When I found out my son was disabled with some health problems I was offered to terminate the pregnancy but I was 30 weeks, I mean I can't abort a child who's that far along in the pregnancy it's morally wrong, but I wanted to, if it was any earlier in the pregnancy I'm sure I would have terminated the pregnancy. I'm only 23 yet I feel like I'm a old woman. I don't bother going out the house anymore because it's so much medical equipment to drag out with me for him, limited on how much time I'm allowed out because of the timings on hes oxygen tanks. I'm a single mum, I'm stuck indoors miserable every day, I drink wine in the evening that's what it's come to now to make me somewhat fine. But i really wish I never had my disabled child, it's ruined my life. There's phases of times I think of suicide because I hate it so much. I love my child, I know this post may make it seem like I don't, I do believe me, but I hate what it's done to my life
And I feel sick for feeling this way but when the time comes when my child passes away from he's terminal disease, it'll kill me but I'll have a sense of relief in a way because I can finally be able to breathe, be allowed to live
I don't know maybe I just am a really shitty person for feeling this way

Please speak to someone. Have you had counselling? Does DS1’s medical team have access to a psychologist, or via a hospice if you have one included?

Does DS receive continuing care funding and have you had social care assessments?

It isn’t specialist help, but Home Start may be able to help support you getting out.

You are definitely not a shitty person @olivialouise31 . You are an ordinary person being asked to do extraordinary things, every day of your life, without adequate support for you and your family. You are being failed by a system that leaves indvidual women to suffer in impossible circumstances.

In addition to the suggestions above, have you spoken to your GP?

Sending you best wishes.

Have you been offered any respite, there are children's hospices out there that offer care. So you can have some quality time with your 2 Yr old.
Is there any support groups that deal with your ds health condition??
Unique is a charity that could possibly put you in contact with other family's with the same health condition.
Home start are a charity that offer support for family's with children under 5.
Normally you'd get 3 hours support a week, they could help you get out with your children or even just help you at home. Having someone to talk to was brilliant, mine even came to hospital appointments. They thought she was granny, still see my volunteer in the street occasionally.
Have you got family who can help??
I can still remember the 6 weeks in hospital before dd came home, her twin was home 2 weeks before..
Hopefully other parents who've spent longer time in hospital will know of more organisations that can offer help.etc
My dd is 21 years old now and today spendt chasing up her ehcp, etc.
Hope you get the help you need .